A Wake-up Call for All of Us: How Can New Media Help?

“The estimates from our nation’s new HIV incidence surveillance system reveal that the HIV epidemic is- and has been- worse than previously known. The recent U.S. HIV statistics are a wake-up call to all of us in the United States to have authentic conversations about what we need to be doing to end this epidemic within our lifetimes.” said Kevin Fenton, M.D., Director of the CDC’s National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention.

This announcement was made before the opening session of the International AIDS Conference (IAC), which is being held in Mexico City this week. The theme of the conference is “Universal Action Now!“, and more than 26,000 people are meeting to discuss effective medical, policy, and program responses to HIV.

The AIDS.gov team asked the first question at Monday’s opening plenary session, “How can new media (blogs, social networks, text messaging, etc.) be used to impact the state of HIV?” The panel was encouraging and had a few suggestions. At the conference, there are a handful of sessions about new media and a desire among participants to learn more.

So, we need your help! Please send your suggestions, questions, or advice about using new media in response to HIV/AIDS. We’ll do our best to make sure your voice is heard, both during and after the conference.

Submit comments to this blog, write us an e-mail at contact@AIDS.gov, or follow us on Twitter* at:

*We’ll be Twittering throughout the week of the IAC. Visit our Twitter feed at www.twitter.com/AIDSbooth . Maybe sign up for an account yourself! If you’re not familiar with Twitter, don’t worry--we’ll be writing about it next week.

Comments

[Carol Perryman]

The increasing popularity of social networking offers a challenge to greatly extend the reach of health messages in ways we might never have anticipated. As the coordinator of Healthinfo Island in Second Life, I have begun to see ways this multi-user virtual environment permits - demands! - new ways of marketing.

First, it is no longer sufficient to 'post, and they will read' (if it has ever been), or even to function as expert disseminators of top-quality information with little feedback and interaction. In Second Life, health support group leaders have formed a coalition. A notice sent by any single group leader reaches more than 40 group leaders, representing membership of around 1,500.

But it doesn't stop there. Those leaders are affiliated with other groups. Group members have 'real world' affiliations that extend worldwide, and many may use other social networking tools, like Facebook. Picture ripples, endlessly multiplying, and the possibilities of health messages designed for interactive environments.

Second, health and information professionals in Second Life are collaborating, exploring new ways to educate and to encourage communities of health support groups to talk about health issues in a global community that erases so many boundaries - especially those experienced by people with severe disabilities who are prevented by illness from finding peers.

On Healthinfo Island, we observed World AIDS Day by hosting talks by two AIDS/HIV support group leaders and a presentation on sexual health by an educator in the UK; a class on finding quality health AIDS and HIV-related information; displays created collaboratively by a U.S. epidemiologist and a young man in Spain who is HIV positive; displays created by the National Library of Medicine's Special Information Services, and more. The event attracted notice and attendance, and fostered lively debate between health support group members and health educators.

Observation and feedback, in turn, helps us to create opportunities for further events, to promote the existence of health support groups, and to disseminate the results of current research, person to person, using networks where trust has been established by previous community membership.

Following World AIDS Day, the leader of one of the AIDS support groups approached me asking for possible speakers on new therapies and nutrition in AIDS and HIV. I was aware of a nutritionist, so became liaison between health professional and support group members. My role extended to supporting the information needs of both parties, and this event, in turn, leads to more.

Third, events such as these ripple exponentially when they are promoted both 'inworld' (in the virtual world environment, through community-specific channels) and 'real world,' as we post to AIDS.gov, wikis, blogs, and more traditional, paper-based media. Observing such activities, health professionals investigate Second Life; we collaborate on health events - and it goes (and grows!) from there.

I don't know what 'the' model will be, or if there is any one perfect and failproof way to reach out and help people to become empowered, critical consumers of health information. But with the opportunity for collaboration, new opportunities may enhance and extend existing models.

Carolina Keats
Healthinfo Island
Second Life
--------------------------
Carol Perryman MSLIS
TRLN Doctoral Fellow
School of Information & Library Science
University of North Carolina at Chapel Hill
Research page: http://tinyurl.com/ymljs5

[kiwanja]

Clearly these 'new' findings are of huge concern, even if they were expected in some quarters.

There are numerous opportunities to take advantage of new forms of digital media in spreading the HIV/AIDS message, and from my own perspective the mobile phone - coupled with other channels - can be a very effective method.

There are numerous case studies which highlight the use of mobile games, for example, to raise HIV/AIDS awareness, and text messaging has been in use for some time as a method of disseminating news and information. I'm not sure how much work has been done in assessing the effectiveness of these approaches, although saying that these are early days, and methods are still being fine-tuned and adapted. A conference held at Stanford University earlier this year focused specifically on the use of text messaging in health - see http://www.texting4health.org

One challenge many organisations face is one of basic regular communications, either with their staff, volunteers or patients/target audience. Although non-US based, a project I have been closely following (because it is utilising my FrontlineSMS software) is in Malawi, where healthcare delivery - which includes HIV/AIDS work - has been revolutionised by opening up text messaging-based communication.

You can read more about that at http://mobilesinmalawi.blogspot.com

Ken
www.kiwanja.net

[David Galiel]

I think the most important concept to bear in mind is "appropriate technology". With all the new, network-enabled ways to communicate and collaborate that emerge every day, it is easy to either

a) feel overwhelmed and withdraw, or

b) eagerly try to adopt each latest, greatest, Web 2.0-and-a-half gadget.

New media can help our work in three meaningful ways:

1) increase efficiency, so more of our time, effort and $ end up helping people in need;

2) provide the means for affordable mass messaging, targeted and individual communication, and information-sharing;

3) provide accessible means to build communities-of-interest, and enable peer assistance and collaboration (people helping people using platforms, tools, methods and information we can provide).

Applying the appropriate new media tools and technologies to address a particular organizational need can be very empowering. You have covered a lot of examples in your previous blog posts.

From my own experience, I have seen teams, working on a grant proposal or other complex project, use a wiki to cut down dramatically on the emailed-attachments that fly back and forth and get out of sync and cause no end of confusion.

I have seen people who have never been inside a professional media studio produce, package and distribute audio and video podcasts that allow them to encapsulate and transfer knowledge in an appealing and approachable way.

I have seen how adopting open standards, open data, open source and open development methods allow creative folks "out there" to mix and mash and combine different new media tools and technologies in unexpected ways - ways we can adapt to the fight against HIV/AIDS.

- For example, taking a database of testing facilities, mashing it up with Google Maps, and then taking advantage of cell phone GPS or other locational technology, would allow anyone, anywhere, with the tap of a finger or click of a button, to locate the nearest testing facility to their current location - without even incurring the cost of a text message or phone call.

Finally, I have seen how empowering simple, community-building, collaboration tools can be, to individuals in need who often feel alone and overwhelmed. Giving people the opportunity to become contributors, to share their experience and knowledge with others and to help their peers, can itself be a healing experience.

Sometimes the most powerful thing we can do is to provide communities in need with the means - in this case, the same new media tools we can and should be using ourselves (along with appropriate instruction on how to use them) - and then let them organically figure out how to address their needs and help one another in their own, often novel ways. It can amplify our efforts and leverage whatever resources we have in a way that creates much larger ripples spreading outward.

Net-based new media tools and technologies can be a community's "net" in another sense, to extend the old adage: "give a man a fish, feed him for a day; teach a man to fish, and he'll feed himself for a lifetime; show him how to weave a net, and he'll feed an entire village forever."

Even putting up a blog (like this one), to inform colleagues and others working on the same issues about new ways to work, can make a measurable difference in the field.

All these new media tools and technologies are either free or affordable, and tend to be much easier to use than computer software used to be. We are, truly, entering an era of technology "for the rest of us".

David Galiel
New Media Consultant
http://galiel.com

[Mark Urban]

These findings have enourmous impact when considering the communications strategies for HIV/AIDS, especially those with disabilities.

Disability data has not been correlated with HIV infection rates, but empirical evidence suggests we need to consider carefully the mechanisms we use to disseminate information in new media. Text messaging and blogging are certainly accessibility-friendly ways of distributing important facts and transmission prevention strategies, but interactive tools [like SecondLife, Twitter, and YouTube, for examples] offer real opportunities for engagement with the increasingly tech-savvy American public.

The challenge now is for persons concerned about the population of HIV-infected persons with disabilities to work within and without the companies that run these tools to address the sometimes significant accessibility challenges that can arise with emerging technologies. Encourage these organizations to work with standards bodies (such as W3C [http://www.w3.org/WAI/]) and disability advocacy groups (such as AAPD [http://www.aapd-dc.org/] to provide the ability for all americans to access critical health and wellness information to combat this increased threat.

Mark Urban
HHS Section 508 Specialist
http://508.hhs.gov/

[David Wessner]

New media may be the answer. The potential audience available through social networking sites, text messaging, podcasts, and blogs is staggering. My concern, though, involves who we are reaching with these approaches. In the US, HIV/AIDS increasingly affects people of a lower socio-economic status. Are these people participating in Second Life or listening to podcasts? Even if the answer is 'yes,' then how do we make them aware of our programs?

In my state, North Carolina, public schools do not offer comprehensive sex education. Rather, by state mandate, an abstinence-until-marriage message is offered. Certainly, information about our programs are not being provided. And, I would bet, students may not access many of our Internet-based outreach efforts on school computers. So how do we get our message to these young people?

We have tried to reach young people through popular culture with a multi-media website:
http://www.bio.davidson.edu/projects/aidspopculture
that provides information about HIV/AIDS within the context of video and audio clips. I think the content may attract young people. But I'm still not sure if we are actually reaching the people most in need of hearing our message.

David Wessner
Department of Biology
Davidson College

[don warner saklad]

What other widely recognized AIDS organizations encourage participatory blogging?... besides the AIDS Action Committee of Massachusetts http://blog.aac.org/ and the AIDS Foundation of Chicago http://lifelube.blogspot.com

[MPower Albuquerque]

MPower Albuquerque has been on the "new media" trend for a few years now. Through Myspace, Facebook, Manhunt, Gay.com and text messaging we have been spreading the good word on what it is we have to offer to our community. Our advice is to stop thinking of the media outlets as trends of the future and to start recognizing that they are real, tangible and highly effective tools in HIV prevention and outreach right now. We use them to contact people about our weekly events, for have information on testing sites and to connect to our target population. Text messaging and internet postings reach our audience with the same ease and quickness as hooking up online and checking email. The best part is, all of the internet resources are free and most young MSM have the capability to text.

MPower Albuquerque brings many young MSM to our physical space using text messaging and the internet where they hear prevention messages and are encouraged to know their HIV status. Before they even step foot in our door they are able to see exactly what we do through pictures, internet videos, blogs, bulletins and chat. Over the last couple of years using internet chat rooms has put us on the front lines in the battle against the virtual take over of the gay community. Chatting allows us to spread our message to a variety of MSM including non-identified gay men or those on the "down low". Because of access to the internet, even those with barriers (money, transportation, location, etc.) are still able to receive the message of safer sex. For the best example of what we do check out our Myspace page at: www.myspace.com/abqmpower

[Mark Clark, New Mexico AIDS Services, Community Health Promotions Manager]

For our work in HIV prevention the staff at New Mexico AIDS Services has been doing outreach in chat rooms in addition to gay venue outreach. Over the last two years, half of the gay venues in Albuquerque have closed. In order to reach men with high risk behaviors we received the approval by our contract, New Mexico DOH, to do more internet outreach for our MPower Project (18-29 MSM/T), Men's Health Project, (30+ MSM/T) and CTRS Project (all ages, HAR, IDU, & MSM/T).

We have been discussing how to get the mesage about low to high risk behaviors across to the guys in the chat rooms. One idea was to make a risk and referral sheet to be provided to make guys aware of their own high-risk behaviors such as barebacking, etc. The assessment of the behaviors determines what messages the coordinators need to provide during instant messaging sessions. another area we are looking into would be to develop pod casts with specific topics about risks would be a great option for the chat room guys.

The local public health office is using the internet to make contact with partners of their patients who have been treated for syphilis. Art Salazar, A NMDOH Health Educator, presented on the topic at the National STD Conference in Chicago. For further reference, feel free to contact me at mclark@nmas.net.

[Jon Lehr]

Perhaps we should consider a campaign to encourage young people to become active in spreading the word by recognizing (with some sort of prize- perhaps a paid trip to a convention) those who have the best website or blog or facebook or twitter or what not. Who better to reach young people than young people. We should try to motivate the kids, not try to influence kids with paid, out of touch bloggers. Face it, we are old.

[Deb Levine]

I'm so glad you guys asked a new media question at the conference plenary. VERY important to add this to the dialogue, whether it's about what's happening in the U.S. or in developing countries.

ISIS is involved in a number of projects using technology and new media for HIV and other STD prevention. We are also evaluating their impact on behavior change, in particular, testing and screening. Right now, in collaboration with UCHSC and Columbia University, we are embarking on an HIV prevention social networking study on MySpace. The control will launch mid-Sept and the intervention mid-October. We expected to enroll 3000 young people-at-risk in the study.

There is also an article about SexINFO, ISIS text messaging service for urban youth in AJPH March 2008 Issue with some great evaluation data as regards using SMS text messaging to encourage high-risk youth to testing and screening services/clinics.

Lastly, an article on inSPOT, our STD/HIV partner notification service online is being prepared by PlOS. In it, we stress rigorous evaluation and research (not bean-counting) to see how these new tools and technologies are affecting public health.

[Seth]

I had a friend pass from HIV. I will be attending the next aids conference.